A decade of psychiatric misdiagnosis: reconstruction and reconciliation

Archive for April, 2008

I’ve had several posts bouncing around in my head this week, but it can be hard to find the time to flesh them out. I’m impressed with those of you who manage to post every day.

A couple weeks ago Philip posted a discussion of this piece by Richard Friedman, discussing the impact of early psychiatric diagnosis and medication on development. The article includes an example of a young woman who had struggled with a low sex drive, and had never been told this is a common effect of SSRIs, which she took from her early teens. She just thought she was defective.

This got me thinking that the impact of meds on sexual development might be particularly important for queer teenagers and young adults. It is really hard to come out, even these days. A two to six-fold increase in the rate of the suicide attempts for gay teens (compared to controls) is often reported. If we take these stats at face value, and gay teens are more likely to kill themselves, I’m guessing they’re more likely to end up in psychological or psychiatric treatment as teens. If I’m right, then gay teens are probably more likely to take SSRIs or other psych drugs, and thus more likely to experience the side effects of these drugs. I’m also guessing that shutting down sexuality at that point might feel like relief. But at what cost? I was on SSRIs in my early 20s, and they absolutely shut me down sexually. I felt it as a relief, at least initially, but I had also already had time to establish my identity as a lesbian by that point, and eventually I came to my senses and got off of them. What if I had gone on SSRIs in high school when I had only just begun to understand my identity as a lesbian?

Difficulties with my family over my sexuality were a huge component of what pulled me into the psychiatric system at age 20. Not once did any doctor or psychologist in my early treatment ask me about how I was coping with coming out, how my family had reacted. It was much easier to diagnose me than to put together that I had just lost all of my family support, both financial and personal, and that maybe, just maybe, this was contributing to my emotional state. I was fiercely protective of my family, and even if someone had tried, I might not have accepted that interpretation. But my medical records make it abundantly clear that no one even tried to put two and two together. It was easier to hand me some Depakote and send me on my way.

My wife and I went to a second night passover seder on Sunday with close friends. At one point in the evening, as we were listing the biblical plagues, we were asked us to take a moment to list additional plagues present in the world today, removing a drop of wine from our cups for each. The obvious things were mentioned. War. Global Warming. I couldn’t think of anything to say aloud, because the only plague I could think of was rampant overmedication, particularly of children. I sat there thinking foster kids, medicated as a matter of course, thinking of kids diagnosed ADD because they have energy and are bored at school. I know it is more complicated than this. I know many people have profound and seemingly intractable problems and meds seem like a way out. But I fear for an entire generation that has had its feelings medicated away since childhood, a generation that has been taught that sadness and anger are illnesses. This was the only plague I could think of, and it was one I could not discuss aloud. I removed an extra drop of wine from my cup and said something obvious, probably about the environment.

We are close to these friends, well on our way to becoming more family than friends. But they are friends we made as parents and have only known post-diagnosis. One of these friends struggles mightily with depression, and credits meds for her current quality of life. Another is a therapist. Another works in a social services setting with the mentally ill. All have a deep respect for the people they work with, but my experience and perspective would fall outside their biopsychiatric framework.

When I believed that I was “bipolar,” I told anyone and everyone, whenever it seemed even vaguely relevant. I claimed I was fighting “stigma,” but I think I actually wore my diagnosis as a bit of a badge of honor. Now that I see myself as well, and the world sees me as well, I find it much harder to speak up. Sure, I’ll express skepticism when yet another kindergarten teacher waxes eloquent on how to diagnose and medicate everything under the sun, gently reminding her she’s not a doctor. I’ll offer unflinching support and a truly empathetic ear when a friend is struggling. But I find myself confused about how much of my own experience to offer.

If I had commented aloud at the seder, I would have probably hurt my friend and outed myself to a room full of people who don’t know my history. A thousand conclusions would have been jumped to in a context where I couldn’t have answered them. I know this was true last night, but it’s starting to feel like rationalization, like I have an obligation to do more. I got out. I’m one of the lucky ones. Fading into the woodwork seems cowardly. On the other hand, haven’t I earned a break?

The place where this doesn’t feel like rationalization is with regard to my kid (or later, hopefully, kids). I am doing everything I can to protect our child(ren) from the damage of my label (see post below). In this context, the fewer people that know, the better. I wish it were none. My wife says that time is the answer, that several years down the road, it will be easier for me to really believe, deep down, that I am truly healthy and from that space it may be easier to speak, and kids will be bigger, so perhaps speaking out would be less dangerous.

One of my worries as I extract myself from the years of misdiagnosis is how my label might impact our children. My wife gave birth to our first daughter, so she is somewhat protected from any claims of genetic tendency towards “mental illness.” However, she is also a very intense, very energetic and a bit of a handfull. We love this about her, and handle her well, but I do worry that teachers down the line might not, and pressure to label will start. If a teacher got wind of my history, you’d better believe they’d push even harder, and that would be with some level of genetic “protection” since I bear no biological relation to her. We are already careful not to talk about this in front of our daughter, and intend never to mention anything to school, but information is slippery. It gets out when you least expect it, sometimes by circuitous routes.

I hope to give birth to our second, who won’t be at all protected. Schools and doctors are quick to jump on any evidence of “mental illness” (and indeed screenings are now sometimes mandated). I worry a doctor with knowledge of my history will assume that any genetic child of mine is at risk and at the first sign of any emotional distress, will refer them for psychological evaluation. I realize we would not have to take such a consultation, at least theoretically. But once notes are made in a medical or school record, they never go away. That child would be marked and we as parents would be seen as negligent and “resisting treatment,” particularly given my history.

Several weeks ago, my wife and I watched “The medicated child” 60 minutes episode, and were deeply disturbed. She said “Sometimes when we talk about this, I figure your concerns are somewhat justified but that you are probably tilting at windmills. After that show, I’m less sure.” (and yes, with that comment she named this blog). I do hope that I am seeing threats to my child(ren) where none exist. But my wife has said that she often wishes these worrisome insights didn’t so often have the ring of truth. In the meantime, we probably will be switching to a new family doctor, one who does not have access to my records or knowledge of my history. Paranoid? Maybe. But if there’s a move I can make now to protect our kid(s), I’d be stupid not to take it.

The short story is that I was brutally rejected by my family when I came out as a lesbian at age 19. In retrospect, I think I had a somewhat reasonable reaction to complete loss of my only support system, but that reaction was labeled “bipolar disorder” and I was heavily drugged for 9 years. I was never hospitalized.

After many years of hard work, I am completely off of meds (since Nov 22, 2006), reconciled with my family, married to a supportive partner with whom I parent our young toddler. My psychiatrist released me from her care well over a year ago, without any concerns. My therapist and I parted ways, since in both of our estimations, I’m fine. She had long since stopped billing for me under the “bipolar” label.

That said, damage from my diagnosis and years of medication remains. I have a lingering borderline low white blood cell count, caused by 8 years on Tegretol. My medical record makes it nearly impossible to purchase life insurance. My diagnosis provided a framework in which all of my emotions were pathologized, by doctors, by friends and family, but most painfully, by myself. For almost a decade, I was never sad; I was depressed. I was never happy; I was manic. A good day was a day on which I felt nothing.

I have considered making my story public for some time, inspired by the writings of Gianna at Bipolar Blast, and Philip Dawdy at Furious Seasons. I’ve held back for many reasons. I have concerns around anonymity, and to be honest, I enjoy the world I inhabit now, where most people I interact with don’t know my history. What finally prompted me to set aside my hesitation was a recent reading of medical records from my early treatment. As I read, I realized how much had happened, how much I have changed, how complicit I was in such a damaging process and how profoundly ill-served I was by those charged with providing my care. Stories like the one I read from my own records are probably quite common, stories of reaching out for help, initially feeling relieved to have found an answer but then waking up years later to find you are heavily overmedicated and trapped, with no clear escape route. I’d like to use this as a space to pick apart some of the threads of this story, to make my experience public so others might know it is possible to get out, and to make connections with people who have made or hope to make similar escapes, withdrawals and recoveries.